Summary of Ear Care in Ichthyosis Discussion Sessions On Saturday 27th March members joined us on Zoom for 2 1 hour discussion sessions about Ear Care in Ichthyosis, held at 10.00am and 5.00pm. Independent ENT Nurse Practitioner, Jo Outhwaite, (previously from Birmingham Children’s Hospital) shared her expertise on ear care. Jo has generously given her time voluntarily to the ISG over many years, presenting at the ISG’s Family Conferences and advising on ear care with families and individuals affected by ichthyosis. Mandy Aldwin-Easton (ISG Co-Founder and Director) and Sarah Griffiths-Little (ISG Director) opened the first session and were joined by 17 pre-registered members seeking advice. Sue Corbett (ISG Secretary) took notes to capture the information about to be shared. We were extremely fortunate to be joined by Professor Celia Moss, Consultant Paediatric Dermatologist. For the second session we had another group of members participate, and were lucky to have Professor Jemima Mellerio, Consultant Dermatologist from St Thomas’ Hospital, London to also share her expertise. Jo Outhwaite introduced herself and took everyone through a brief presentation on the structure and workings of the ear. Although wax is a natural substance that the body produces to trap dust and other small particles, it often creates a problem for individuals with ichthyosis where excess skin is shed by the body. This excess skin and wax can accumulate in the ear canal and cause a blockage thereby affecting hearing. Following the presentation, we discussed questions sent in advance by our participants and invited discussion amongst those on Zoom. Jo recommends daily moisturising of the ear canal with a lubricant such as olive oil. Almond oil can also be used for this purpose, but only if the individual doesn’t have a nut allergy. Jo stressed that cotton buds should never be used in the ear canal. Other products that can be used are Otex (not Otex Express), or sodium bicarbonate drops – however these products should be used with caution as they are stronger than olive oil – these should only be used for a couple of weeks at the most, and not on a long term basis.. One of the participants stated that he used ‘Ear Calm’, particularly when his ears were itchy. Ear Calm is a spray that contains acetic acid which is an anti-bacterial and can help with minor infections. It is easily available to help with ear care, but again should also be used with caution. Treatments in spray form can be a little difficult to administer so care is required. They can flood the ear if too much is sprayed, but can be wiped away with a tissue or cotton wool. Jo also strongly advised against using any wax removal tools within the ear at home, as these could easily cause a trauma within the ear that could lead to an infection. Only fully trained professionals should use any form of tool within the ear canal. Ear syringing is often necessary when the build-up of wax and skin becomes a problem. In September 2020 there was a directive by the government which stated that ear syringing is no longer on the core services that GPs should provide. Some practices will have continued to provide this service, but many have stopped. It may only be available at the ENT department at hospital. You will need a GP or Dermatologist referral for this. It is also available privately, but incurs a cost. If you do decide to have microsuction/ear syringing privately please ensure that you choose a qualified experienced professional. Any discharge from the ear, smell or pain could indicate an ear infection – this will necessitate treatment by your GP and antibiotic ear drops may be prescribed. Oral antibiotics are not always appropriate in this situation. Some of our members mentioned that they experience ‘itchy ears’, ‘wet sounds’, nausea, travel sickness etc. Jo’s advice is to use a regular moisturizer (such as olive oil) in the ear canal. Sickness and nausea can stem from the fact that the ears are blocked and you feel a bit disoriented. If hearing remains a problem even after treatment it might be wise to have a hearing test – these are available for adults at no charge at many opticians and pharmacies. If individuals wear a hearing aid, or wear ear buds to listen to music etc, Jo strongly advised cleaning the hearing aid moulds or ear phones between each use to avoid infections and cross contamination. When swimming it is important to wear ear plugs to avoid any of the chemicals used in the pool or any debris from entering the ear canal. Once again, these should be cleaned after each use. The condition known as ‘glue ear’ is often treated by inserting very small grommets into the ear drum (carried out under anaesthetic). Sometimes, due to skin migration in those living with ichthyosis, these grommets fall out or get covered over by the skin. Should this happen hearing aids might be recommended. It is really important that any problem with hearing should be investigated by a GP, especially in young children as their learning could be affected. One of our young adult members told us that, when wearing headphones, he puts them on his head over his hoodie – this creates a breathable barrier between the ear and the headphones and helps avoid problems. One member asked if the ear canals grow bigger as a child ages and grows. Professor Mellerio told us that facial structure changes occur up to the age of around 18 and that the ear canals would grow bigger during these changes and thereby lessen the problems experienced in the early years. We are extremely grateful to Jo Outhwaite for helping us with these sessions and for all the advice she gave, and Professor Celia Moss and Professor Jemima Mellerio for their expertise. These medical professionals kindly gave their time freely to support these discussions. Should you have any more concerns you may find our Ear Care in Ichthyosis leaflet useful, which is available on our website under the Caring For Ichthyosis section. You can also get in touch with us if you would like further advice. These sessions are only worthwhile if you, our members, participate and share your hints and tips. You bring the discussion and questions which helps all those listening and generates conversation. Thank you to everyone who joined us for our Ear Care in Ichthyosis Sessions. For more information there is also a detailed article about Ear Management on our website. We are in the process of planning more discussion sessions to discuss various aspects of caring for ichthyosis. If there’s a particular subject you’d like to discuss please let us know.